Unilateral or Bilateral Mastectomy - Pros & Cons for ILC

karstock

Hi, I learned on April 12th that both biopsies taken from my left breast on March 26th have ILC. The MRI showed at least three more (Stage 1a). They are all very small, but given there are now at least five, the surgeon's recommendation is unilateral mastectomy. I am about 95% certain I'd like to just go for the bilateral, as the stress of the call backs and biopsies in the future is not worth it in my mind, but I'm curious as to what others might say about that. Especially with the ILC diagnosis which doesn't show up on mammograms so well, any tech I get will be concerned so I'm likely to get extra call backs as a result. And though I know it's a "personal" decision, hearing from others about how they made the choice would be helpful to me at this time.

Also, I'm meeting with the plastic surgeon next week to find out if I am a candidate to have reconstruction (not implants). I'm entertaining this because it can now be done all at once, but I'm concerned about a few things and would love to hear of anyone's experience with reconstruction with your own flesh (good or bad), or going flat (good or bad).

I'm trying to not yet worry about what treatment might look like post-op. Just one step at a time, and the decision about which surgery route to take is now the only one I need to make to get to my 'surgery date'. A 1-2hr surgery vs. a 10-12hr surgery feels like a big enough decision for now. When I have that I think it will help with the anxiety due to the inability to plan my life as I have always done. Thanks in advance for taking my poll:

Unilateral or Bilateral

Reconstruction (with flesh) or Flat

moderators

Hi @karstock, and welcome!

Honestly, we think this is one of those decisions where everyone’s “right answer” can look completely different. 💗 There are just so many personal factors wrapped up in it: ILC, peace of mind, recovery, body image, future screening anxiety, lifestyle, age, support at home, and simply what feels emotionally manageable to you.

We’ve seen women choose bilateral because they knew the constant scans, callbacks, and biopsies would take too much of a toll emotionally, especially with ILC being so sneaky on imaging sometimes. And we’ve also seen others choose unilateral because they wanted the least extensive surgery possible and felt very at peace with that choice too.

Same with reconstruction versus going flat. Some women feel incredibly grateful they did DIEP/flap reconstruction and love their results. Others feel equally grateful they stayed flat and avoided the very long surgery and recovery. Neither path is “better”, just different.

And honestly, a 1–2 hour surgery versus a 10–12 hour surgery is a huge thing to process. It makes so much sense that you’re trying to take this one step at a time instead of thinking ten decisions ahead right now.

We really believe whatever choice helps you feel the most peace in your own body and your own life is the right one for you. Sending you lots of love as you sort through all of this. 💕 Hoping others chime in!